Blah, BLah, BLOG
Grieving is something we all do at some point in our lives for many different reasons. I believe it is good to grieve, it helps me to adapt, to be brave and to accept the loss. Like many of you, we all had experienced loss, so I am sure you understand what I am saying. I have accepted that I am going blind, but funny thing is, it is not a one shot deal. Because Retinitis Pigmentosa is a progressive disease, I continue to grieve many times over, every time there is a new change in my eye sight: the tunnel gets smaller, the flashes get brighter, the colors get duller and so forth. Funny, I don't grieve about my hearing loss, I've had it all my life and I don't know it as a loss. But with RP, I know its a continual journey of loss, because I remember what the sky looked like when I had full vision. It was vast, glittery and beautiful, and thought, even as a child, I was just a tiny little speck in all of this vastness. I remember my dad, a long time ago, laying on the grass during summer evenings and he would passionately talk about the universe and point out the stars and name them all the naked eye could see. It was magical, I remember it well. Now, many years later, I scan the skies so many times looking for those stars, all I see is blackness. But there is hope. Chris showed me that hope. He was determined that I will see stars again. One summer night he set up some pillows on the deck, turned off all the lights in the house and the world became black. I couldn't see a thing, Chris says to me "be patient, give your eyes a chance to adjust" and I'm thinking to myself, why do I need to adjust? black is black! Right? After about 20 minutes or so, he takes my hand and points to a star and says follow the line to where your finger is pointing, and you will see a star. After a few minutes of focusing I saw a flicker! I grew very quiet, and started to cry, but this time it was not because I was sad, it was because I was happy to see a star and not just one, but three stars. Chris even had a back up plan if I couldn't see stars. He then took me to another deck at the front of his house and sat me down on a chair. I hear Chris moving about behind me but kept my eyes on the deck. Suddenly, strings of lights lit up across the deck like a constellation. It was magical, and I will always remember it. Now, I have a Magnicon telescope awaiting for me to once again explore the heavenly skies. It will be magical. There is hope...
water color of Cannon Beach, 2nd runner up in the Passionate Focus Art Show 2010
In today's world, there is the ever changing technology, vast information from internet and social networking and it is part of who we are today. I am thankful for the technology. If it weren't for computers, I would not have met so many wonderful people, reading about promising treatments and technical aids to help us connect with the world.
In order to live our lives to the best of our abilities, we need to be honest with ourselves and to be open about it. I know by personal experiences, it has taken me a long time to tell people that I wear hearing aids and have Retinitis Pigmentosa, especially during my working years. I struggled when working, keeping this secret to myself. Why? I was afraid I would lose my job. I know I'm not alone on thinking this. I'm sure many people keep their disability a secret from their co-workers. It is such a burden on ourselves, and creates so much stress to our daily living. I had told my boss that I was going blind and felt it was too dangerous to carry on with my job and told him that I should resign. Do you know what his response was? He responded by asking me how can the company help me to keep working and offered me a different position. Wow, I was floored by that reaction. I undervalued myself once again. My mother had died 3 months earlier and I was struggling with grief which had clouded my better judgement and stuck with my decision. So, if you are thinking about leaving your job due to your disability, ask yourself, can I continue to work if I had the right tools? Talk to your employer, maybe he/she could help you to make your work environment safer. What do you have to lose? There are programs both private and government can help you to continue to work. You just have to research and network for some answers. Unfortunately, I never knew of such programs and not sure if any was available to me thirteen years ago. There is so much more out there for us now, we have to seek out and find it and sometimes it is hard work to get the things we need, but it is so worth it in the end. I know I can't change what has happened but I can share my experience to help others when you are at this point in your career. Having said all that, I do not regret my decision because it has helped me to be the person I am today. Since I have retired, I became a runner, ran 11 marathons (along with many 1/2 marathons and other distances), done a triathlon, traveled on my own, became an advocate, volunteered in different organizations, became a member of the International Lions, took up kayaking, dragon boating, skiing, yoga, rock climbing, and even entered an art show in Chicago, the list goes on. Life does not end at retirement. This is my journey into blindness. Life is good!